PERSONAL POST: This is a taboo subject but I’m going to talk about it because health insurance is and extremely important topic. As most of you know I have a neurogenetic disease. I am on about eight medications a day, a monthly shot, and Botox every three months for horrid migraines. My monthly shot is lifesaving, point blank. Without it I am bedridden. Without three of daily meds it’s the same, unproductive, bedridden, end your own life kind of pain, seizures daily. I’m not being over dramatic, it is reality and was a reality from 2008-2012 you can ask any of my friends from that time.
My monthly shot is over $1000 a month w/out insurance, my other three lifesaving meds are about $300 and $500 each without insurance. Then you can add on mandatory doctor visits to check on my pacemaker, and neuro stuff.
Since I am a full time student (13 credits this semester 16 next) and I intern and volunteer to increase my training; I personally can’t work with my illness on top of that. Even if I quit interning and volunteering I would only be replacing that with about 13-15 hours of work a week. Not enough to make insurance and the price of Obama care didn’t make it worth it, I would literally be working for insurance with change left over. (yes I talked with gov. advisors they told me not to work that it wasn’t worth it) If you are thinking that doesn’t make sense remember I’m single, and have no children. We don’t get the same perks you married parents do. They make more money off of us to spare you.
Yes, I could cut time at school, but I would lose my full ride scholarship. That kind of defeats the purpose of saving money. Instead I opted for being labeled a disabled dependent and be on my parent’s insurance. Now all together my meds cost about 200 bucks a month because my rock awesome insurance.
Today I got a call that even though we called the insurance twice in the last six months to make sure I was still on track and covered, that they ended my insurance coverage at the end of June. Just like that, without any warning… even though my dad paid for the benefits package that covered me all year. Thankfully, because of my dad’s position and our now ten-year history of dealing with insurance we know how to deal with this. We know chances are I will get back on insurance and everything will be okay even though it isn’t still certain. However, millions of American’s are not this lucky, I’m not saying universal healthcare is the answer either because my friends in other countries with UH aren’t allowed the lifesaving medications either because their version of the FDA does not allow them. It’s how they get around paying for chronic patients. What I am saying is our system is messed up, it’s in disarray and something needs to change. For instance, the company that makes the $1000 monthly shot I take has made a deal with select med, they only get charged $100 for it and I get charged $10. Why? How can they do this? Why does the cost of healthcare change depending on the people you know?
Here are some vidoes on Ataxia I have cerebellum ataxia type 2.
Us folk with autonomic dysfunction sometimes have a dirty
little secret. I’ve mentioned it before but after my ataxia and dysautonomia
buds have been asking more questions about it I’ve decided to talk about it.
As we lose control over our bodies we can have embarrassing moments
all the time. Swinging our hands in the air, people think were drugged out on
GHB or some other heavy recreational drug. We walk funny, we sound drunk but
one of the worse is sometimes we gotta wear a diaper.
Incontinence is a very real very common occurrence. Many men
and women endure it for many different reasons. Having children, stress incontinence,
overflow incontinence, and this can be just in otherwise healthy individuals.
Normal pressure hydrocephalus, which is caused by an
increase in intracranial pressure and not enough of it absorbing in the brain
can cause it. One of the late stage systems of Friedrech’s Ataxia is UI. However from what I have gathered from my
doctors, incontinence can be common in patience with Ataxia because the nerves
aren’t working properly. This is why for some people they can no longer feel
down there as they use the restroom and they kinda have to guess if they are
using the correct muscles or not. I’ve never had a baby but I’m told it feels
similar to when a woman has to push after an epidural.
Here is a link to some information from ataxia.org.uk A
GREAT site for more info on Ataxia:
Some of
my family members have been getting questions about what’s been going
on with me. And/OR how come I’m so open about my illness.
I’ve
made the decision to be so open about what I have been going through because I
want to take the stigma and shame away from having a chronic illness.
The
stigma and shame is what causes a lot of the depression in our community. When
things aren’t talked about people wonder if it’s normal for them to feel those
feelings or experience what they are experiencing.
I have
gotten over the shame and want to find the funny; because what we go through
although some days is heartbreaking and irritating is pretty damn funny.
So
instead of there being an army of us sitting at home in pain behind our
computers I want us to unite and find the good we can bring to the plate.
We are
as a whole an inspirational people, and if we keep what we’re going through a
secret we won’t be able to help others who are not only experiencing similar
problems, but people who are just struggling with the everyday ups and downs.
That’s why
I have weird facebook status’, that’s why sometimes I over share. Because I have
seen to many women and men going through what I am going through and they are ashamed about what their body has done to them. There is no need to be ashamed.
Whether its Cancer or MS or Muscular Dystrophy or Dysautonomia etc. You are not your illness and you should not be ashamed of what you are going through.
Long story short, this is how I’ve stayed sane, healthy, and
am coping with copious amounts of pain.
1.First I’ve memorized this poem/saying and say it to myself a
hundred times a day:
“God grant me the serenity to accept the thing I cannot
change, the courage to change the things I can and the wisdom to know the
difference.”
2. I stretch every single day, no matter what. Whether you feel like crap, or your body is
going to break; or you have twenty places to be at one time. First things first. You
stop, and get your stretch on. Stretching for people with Dysautonomia, MS, Parkinson’s,
or people who just get leg cramps is extremely important. I can tell a huge
difference between my days I stretch and those I don’t. I stretch consistently throughout
the day. In the morning when I first wake up I go through each position. Then throughout
the day when I get a moment to myself I do quick little stretches as much as
possible. My main stretches all come
from this fabulous book called (bellow)
Stretching and Toning by Melissa Cosby
I love it because it’s spiral so it lays flat. It has instructions
for several fitness levels so if my legs just won’t move like they should one
day I can revert back to beginners and on my good days I can go to Advanced. I’m
forgetful and ADD so I love that it goes into detail for each stretch but then
in the back there’s a page that sums them all up. This way you can go back and
make sure you haven’t forgotten how to do the stretches correctly and make sure
you haven’t formed bad habits.
3.Exercise daily, no matter what. I see those eyes rolling. I know this is a hard one but here’s the thing. Even people with the most limited movements can find an exercise
for them. For years I was told not to exercise because I would pass out. Then I
was told to do it for three min at a time. And here’s what I’ve found. There’s
this hilarious old lady that comes on PBS every morning at 9:00. She sits in
her chair and exercises. Sure you feel dumber then a playboy playmate at a Mensa
conference but it does the trick. Also I have this awesome machine. It’s like a
bike but you can stay on your couch and pedal, and then you can lift it up on
your table and work on your arms. It’s fantastic.
I found mine at Walmart.com
4. I’m now a yogi. I do Yin Yoga almost daily. I should do it
every day several times a day, but I don’t.
Don’t give me that look! I know it may sound crazy but if you really
give into it and your body can heal itself between bad days. It’s amazing! Plus
for the hours right after each session you’ll be standing up straighter then
the Eiffel tower! Here are my favorite videos:
Yes I know they seem stoned...but doesn't that make it more fun?!
5. Learn to meditate. There are hundreds of methods out there,
find one that’s right for you. I have a few favorites look HERE
6. On your bad days get out of bed! Even if you can’t move,
your joints are killing you, and each vertebra of your spine screams out in a
pop as you move upward. You got to continue to move your location. For
instance, in the morning, move from your bed, to the couch. If you need to keep
your favorite pillow and blanket, but just make sure you get out of bed. Then a
few hours later move from the upstairs tv room, to the family room. It’s
amazing how much better you’ll feel on those bad days if you push yourself to
change your surroundings even if it is just from one room to another.
7. Try to get your mind off your pain while excersizing and
getting ready. The reason why it is so hard to be motivated in the morning is
you are dreading that pain. So instead of watching your favorite tv show while
on your butt at night. TVo it or watch it on hulu as you are getting ready for
the day and doing your stretches. I always have whatever show I love on while I
stretch and I watch my horrible guilty pleasure, TMZ (you can get the episodes
on their website) while I do my hair/makeup/and get dressed. It distracts me
from how much it hurts to do those tasks.
8. Find your outlet. You have to find things you can do every
day besides watching tv, no matter how you are feeling. Make sure these are
things you love to do and make you happy. Here are some of mine:
My music. It’s amazing how much music can uplift you and get
you motivated. On days I don’t think I can do my stretches or go on a walk my
music usually does the trick to at least get me motivated to walk to the
mailbox and back!
My “Happy journal.” I keep a journal of things that makes me
happy. It’s an 8x8 scrapbook of random things that make me smile. Scrap-booking and just looking at my scrapbooks
can put me in a great place. If you don’t have the money or movement in your
hands to scrapbook an easier and cheaper way to go is Costco’s online
photo books. There are other websites that do great scrapbook pages but Costco’s
photo books and scrap-booking pages come out to costing less than if you were to
print out each of the pictures individually.
Then I keep a normal everyday journal but I do more doodling
then writing.
I send postcards to
my friends. Letter writing is such an important lost art I think. So I write
letters and postcards. It’s also a good practice to keep you grateful. Writing thank
you notes and love notes to your friends and family really helps you focus on
why you should keep fighting through the pain.
On my good days I do
photography so that on my bad days I can sit in bed or on the couch and have
fun photoshopping them.
I’m not a big fan of facebook, but I’m obsessed with this
website called polyvore.com. It’s so fun! Basically you make little fashion
sets. Sounds stupid I know but it’s my guilty pleasure.
Some other Ideas are reading, blogging, painting, crochet or
needle point, puzzles, brainteasers, soduku, playing card/dice/domino games
with family or friends, cook, etc.
9. Get out and volunteer. As of right now I can’t work. My days
are too sporadic and unpredictable so there’s no way I can hold a steady job.
So I volunteer at a Women’s shelter a couple days a week for a few hours, and
thankfully they are flexible when I have bad days. It’s perfect because for the
most part I sit, but I’m still challenged to get up and help out the girls.
Some days I’m on my feet the whole time. It’s hard but it’s good to push myself.
Everyone there knows of my limits so if I say “that’s too much” it’s no
problem. And since it’s volunteer work they are just grateful I’m there no
matter what. I’m sure retirement homes, shelters, schools, and programs for
persons with disabilities would be more than happy to have you.
10. If you know you can find a job that fits with your body and
abilities go for it.Look for jobs you normally wouldn't, telephone operator, florist, receptionist. Even if you are worried that they will be put off by your
illness. Even if they are at least you tried, but I think you would be surprised
by how understanding some employers can be.
11. My next piece of advice may turn you off but it’s really
important you take it. Get yourself a councilor/therapist/shrink! I will go into the importance of one in a
later post, but for now look for someone
who specializes in chronic illness or disease. My therapist isn’t there just to
listen to my problems, but teaches me ways and gives ideas to improve on my quality of
life. It is also very, very important that you have someone unbiased who you
can really confide in when you have an illness, because they understand all 360
degrees of what it’s like to have an illness, be a caregiver to someone who has
an illness and be a provider or physician to someone with an illness. It may take trying out a couple of specialists
to find one who fits your personality and what you are looking for but once you
find it they can really be a great asset in your life.
If you can’t tell, I love my therapist She’s fun and sassy
and reminds me of a high school guidance counselor. Her purpose is to make me
realize if my health isn’t going to change then I have to. She gives me ideas
on how to improve my life. I’ll let you in on a secret; most of the ideas on
this list were hers.
Which leads to my next word of advice...
12. Read this book:
I have read my share of self-help books, to spiritual books,
trying to find the best way to edify myself. Other than the Holy Scriptures I
can one hundred percent say, for me this is the best book for self-edification.
It’s geared for people with high anxiety, but it works with
people with illness too. For instance it teaches you to take those bad thoughts
you have about yourself and turn them from a feeling into an object that you
can analyze. In doing this you realize what a silly thought, why am I thinking
that. And then you can take your forefinger and thumb and flick them away. I
now view my pain this way. I view it as an object instead of a feeling and
though it’s not so easy to flick it away, pain doesn’t have the power over me
that it used to.
It also teaches you meditation. Something I have been
practicing for a while and found extremely important in my quality of life. There
are some odd meditation exercises in here but just do the ones you find are
good for you. I will also do a post on
my favorite forms of meditation, so look for that.
I’ll be honest It’s a heavy read, and you’ll want to fish
through it fast. The first five or so chapters are okay to scan through just as
long as you feel like you are getting a grasp of what he’s saying because he is
laying a foundation, but it’s really important to take your time on the rest of
the book.
Don’t be afraid to redesign the little assignments he gives
you to fit your situation.
13. Count and organize your spoons. AKA Energy I will go in a
later post, but basically don’t over do it. If you feel good one day don’t
freak out and run a marathon. Otherwise you’ll crash the rest of the week. Plan
out your week and save energy for tomorrow.
14. Last but not least. Confide in a friend. Don’t be ashamed to
ask for help.
I live with my parents and they know what I go through because
they see it firsthand every day. However my brother, his family and my extended
family not to mention my friends in the past were kept in the dark.
It’s important to open up to them so they know the details
of what you are going through. I hadn't really told my grandparents exactly how
bad things had gotten, and they got a rude awakening when I was left needing
their assistance to help me to the bathroom. These two were in their late
seventies and had to basically carry me to the bathroom because I couldn't move
the right side of my body. I’ll spare
you the rest of the details but it’s one of my more awful memories. If I had
been honest with them and had a conversation on how they could help me I don’t
think it would have really traumatized me as much.
I usually don’t talk about my illness with my friends much either,
it just doesn't come up. I won’t let it. Even if I’m on the couch slumped over
in pain we talk about anything else.
However, I've learned I need to give up my pride every now
and then and talk about it. Usually we laugh about the silly things that happen
because I can’t make it to the bathroom in time or fall over because my legs
give out or how I threw up on my dad in the Mexican restaurant parking lot. But
we laugh about it because that’s how we have decided to view it. Not as sad
events, but we force ourselves to see the humor in it. So instead of, “oh (frown) It’s so sad you
peed your pants, and then your dog peed on you.” (Tear.) It’s “Oh my gosh! That is so freaking funny I’m going to pee my
pants right now thinking about it!” (Hyperventilating)
My grandfather had heart surgery this week. While waiting in
the waiting room we ran into some friends from my childhood. It was so strange, but totally meant to be.
They were there because a mysterious ailment made their mothers heart stop. She was rushed to open heart surgery and then rushed to
the best hospital in the state for more surgeries. After talking with my friend
for a little while I decided I should write a
few things to help others experiencing the same situation.
Be as patient as you possibly can.
Don’t be
afraid of prayer, whether or not you believe in God, circumstances like this a
prayer could never hurt.
Always make sure while talking to the doctors
there are at least two of you. One person cannot pick up everything that is
said. Bring a pen and pencil and a buddy to all doctor consultations about your
loved one.
Obey the visitor’s rules. It may get really
frustrating at times because you want to see your loved one at certain times or
you don’t want to leave them. But too many people in the room or staying past curfew
or going in when you have a cold could seriously complicate the progression of
your loved ones recovery.
It’s common for people who have had big
surgeries like brain surgery or open heart surgery to go through a sort of hard
core depression afterward. Help them realize this is normal, bring the light
back into their life and be a good support for them to lean on during this hard
time, but don't get frustrated by their behavior.
Their life may never be the same, tell them it
shouldn't be. My biggest obstacle and sometimes still is, is remembering how
much I used to be able to do and how little I can do now. It’s the most
frustrating part of the journey. I have realized I only have so much energy
every week and if I over do it one day I’m out the rest of the week. This is
important for you and your loved one to realize. They will want to get back to
normal, but it may take time, for me it has taken years and I’m still not even
close to what I used to be. So this is my new normal. I’ve accepted it. But it
took a lot of time a lot of tears and a few broken plates to realize this.
Recovery may take longer than expected. Your timeline
and the body’s timeline can be two totally different things. Push yourself but
don’t get frustrated if you or your loved one hasn’t accomplished what you
think they should by your standards. Your doctor will step in and let you know
if something is wrong. Otherwise enjoy the journey and don’t get mad at
yourself. Anger doesn’t help the bodies progression
Their personality may totally change. It is not
uncommon when something like this happens your personality takes a huge
remodeling. I am the first to admit who I am now, how I handle situations, and
my views on life are totally different than they were before I first got sick.
When you have a loved one who is going through this change it may be incredibly
confusing and frustrating because they are not who you fell in love with, or
grew up with, or love. But guess what, they are. We all change throughout our life’s
but events like this just make the change quicken. I’m reminded a rock slide
that happened in Zion National forest years ago. Before the slide it was well
established in the scientific community that rock formations and canyons take
hundreds of years to be made. But after this unique rockslide the entire areas
look changed. The slide made unique formations broke an arch into a hodo, and a
mountainous area into a canyon. All these
things that were previously thought to take years to happen took literally a
few min. Your loved ones personality may be this drastic, but under everything,
they are the same person, so embrace the new them. If they have traits that are
now considered dangerous behaviors get them help, otherwise try to accept the
new them.
Let them know you are there but give them space.
When your life changes like this, a new self-awareness occurs. Your loved one
may need that alone time in the hospital and during recovery to help them find
themselves again. Don’t take their dismissals personally. Their life has
changed, let them find stable ground again.
This year is the first year since 2008 that I will NOT be in the hospital for Thanksgivin'!
I know, crazy cakes!
For some reason every year they have always managed to let destiny plan my stays (for overnight EEG and other testing) that covers the week of Thanksgiving.
Last year I spent the entire month deteriorating at the Mayo Clinic, however this year I get to be closer to home eatin turkey with the grandparents!
Sadly I have not escaped this years tests all together though. In December I'll be stayin a week or so at my states amazing Hospital that is one of the top notch research hospitals in the country! The heads of the Neuro and Cardio, Gyno, and Gastro departments will all be collaborating Mayo style to get in my brain and figure out if there's anyway we can slow down this madness.
I'm excited for the hope this brings me and my wonderful parental caregivers. They surely do need a break too so having someone else coming to my rescue for a week will be a huge burden lifted.
BAD SIDE....I have to go off ALL my meds. They want to see my body as clean as possible to see exactly what it does on it's own. So far I've only gone off three of my million...okay eight...medications and already I'm a limpy wiggly child. I don't know if I'm going to survive a few more weeks of detox. I am really happy I get this opportunity though. I'm always so scared that my meds may be causing extra symptoms so now we'll really get to see. The pure me.
Calling all idiots: Maturity is purely biased on opinion. A serious life is nothing but a stubborn one. An elitist prude is just as much of an uncultured swine as a redneck white trash wife beater. And my generalized judgmental remarks are just as sophisticated as a four year olds sense of self.
My maturity peaked when I was twelve; it’s just been down hill since then. But what really decides maturity? Is it the way we communicate with one another, is it the way we react to society’s unspoken rules and morals? Is it our experience with life’s obstacles and trials?
What about professionalism? From my observations we gauge ones professional behavior on how serious, devout and unattached the worker is.
This certain behavior is what I’ve generally experienced with doctors. I truly believe they mean well, but the healthcare system has become a physical wellness version of a fast food chain.
My diagnosis along with thousands of others have been delayed, overly scrutinized; yet over looked because of the manner doctors and health care professionals have approach the situation.
My experience however at the Mayo Clinic pretty much shattered my generalized belief of what the health care system is capable of. They prove that professionalism does not require a doctor to become aloof and unattached to be able to fully provide the care needed for their patient.
Between battles with insurance and doctors, it took me three and a half years to get to the Mayo Clinic. I was told there was a possibility of getting help there but not to get my hopes up. From the moment we checked in the organized offices, patient/customer service and bedside manner blew me away. For the first time in years I felt like my voice was actually heard. They listened to every detail; every concern then they attacked the problem, not the patient.
I had a team of doctors from different specialties gather together with and without me to talk specifically about my case.
In two weeks I had more tests knocked out then I had within the last two years. Each test examined by each doctor, evaluated then the results were immediately passed down to me. It’s been believed that I have POTS , although my disease has a lot of similar symptoms it’s actually caused by my heart rate and blood pressure having minds of their own, along with other random glitches in my system.
My old neurologist told me flat out that it’s impossible that I’m still fainting because I have a pacemaker, yet we discovered that is far from true. My heart rate can be high because of my pacemaker and in normal range yet my blood pressure can drop to freakishly low levels.
Never give up and never surrender your patient rights. I had to push my local doctors to give me a second chance and allowing me to go to the clinic. The medicine and therapy regimen my doctors have put me on has completely turned my life around. I still have my bad days; I still sometimes have to push myself one moment at a time. My bones still freeze muscles still spasm but my energy is up along with my hope.
You don’t have to be a hard ass in order to be a good doctor. I think it’s funny that many judge Doctors abilities about his knowledge about medicine. But what good is that knowledge if you’re too stubborn and cocky to see the whole picture or judge the patient too quickly. Professionalism is not run by maturity, but by common sense and the ability to see with your eyes and not your ego.
i love this picture it reminds me of when i was a little girl and i would sit on the shore of a lake we used to visit in my big sweaters and almost bigger bows.
When you’re struck with a chronic illness it’s not uncommon to feel a great sense of loneliness. It’s there in that great big package your body gives you along with the aches, nausea and confusing fatigue. It comes even when your family and friends surround you and often have friends around. It’s just something you have to deal with.
I’ve felt loneliness before I got sick, everyone does at some point in their life. However the years coming up to it I was too busy to get lonely I was too many quests and had too many adventures to stop and think.
But as of late my thinking has been too much, the late nights when I’m still awake and it seems the rest of the world is sleeping it’s hard not to feel lonely.
I ask myself why, because I’ve got a great family and many friends and lots of support. But I think the reason I have the loneliness is because there’s no one else who knows exactly what it feels like to go through this. It’s not a “oh sad, lets feel sorry for her.” sort of thing, it’s just matter of fact. No one does, and quite honestly I thank God. Ours is an illness that no one sees, and it’s not like cancer where people have more awareness and understanding. Plus lets face it. Dysautonomia is just weird. Especially when you’re a paradoxical mess like I am.
But I’ve decided I’m thankful for these lonely spouts.
They’ve allowed me to really understand myself more and gain the most out of my experience. I’ve always had a hold of who I am. Now days fitting in is the exact opposite of what I want to do, and I love myself for it. My very conceited cousin was telling me how hot he was the other day and I thought to myself how odd our family was because we’re all so confident. But I realize the reason why we are is that we’ve been faced with a lot of challenges. Not necessarily more then the next family but for some reason a lot of us have come out with an extreme sense of self.
Now don’t get me wrong, my cousin’s a little twit but I’m proud at the same time that even though he’s in the scary high school stage he can hold his own.
I’ve embraced the lonely and turned it into a time of meditation, further understanding of myself, my progression and trying to psyche my body into healing itself.
I’m not going to lie, my spiritual ambitions are not what they used to be. I think it comes from long absences from church because of my bad days, but I think I’ve also realized how amazing it is that I can still develop testimony by studding, reflecting, and searching for answers at home by myself. Don’t get me wrong the church community is greatly needed in ones development because we learn and lean on each other. However I’m not entirely disappointed in my self progression with studding on my own.
I guess it’s one of those “if no one was watching what would you be doing?” sort of things. I’m proud of what that answer is.
But one of the most important things I’ve learned within the last weeks, it’s okay to cry. Not for an hour, not for days at a time, but sometimes it’s okay to let loose. I’ve never been one to cry over emotions, especially self pity. But I broke down the other day to my best friends and I didn’t even know why, it was over something extremely stupid.
But it was because I just finally broke. Yeah, it sucks that I’m not able to do the things I was able to do, and that the doctors go back and forth and I miss working, I miss playing soccer, and having as much energy as I used to when playing with my babies. And I feel a guilt that I’m not there for my friends and family like I used to be.
So I cry. Just for a min. Then I remind myself that I am one strong woman. Freakishly strong in fact, and that I’m going to get through this, because when you have trials God helps give you the strength to handle it. I will find a way to defy all the odds, and day by day I will get better. Even if I don’t get better physically I will get better mentally. And I remind myself I’m not ordinary, I’ve never felt ordinary. And unordinary people do extraordinary things.
Actress Britney Murphy went into cardiac arrest and died December 20th 2009. Many speculate that she died of a prescription overdose because of the toxicology reports. Mainly because of the prescriptions found in the home, however I’m not so convinced, the drugs in her system were all over the counter drugs except for one, so she would have only had one prescription. Her Husband who also died from heart failure not long after her death claimed the other prescriptions were for his severe heart condition.
She had a severe case of pneumonia and the drugs found inside he could also just be helping her get over that.
There just isn’t something right about claiming it was an overdose. Her family members are determined to get the word out and spread awareness of what they believe contributed to her death.
Her Grandmother, Aunt, and half brother all suffer from Dysautonomia and P.O.T. syndrome. Although she was never diagnosed they say she displayed many of the same symptoms, including high heart rate, and extreme weight loss in a short period of time. Many claim she had anorexia but others believe it could have just been because her heart was overworked, or maybe a bit of both.
The following is a video of her brother Jeff who has suffered from Dysautonomia for years as he talks about Britney and P.O.T syndrome. The hope is to help spread awareness and open the eyes of medical professionals and the public on the severity of the disease.
